Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

Stacey lives with Tarlov Cysts, of which the incidence rate is unknown.

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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Global Genes Comments

  1. I’ve just been told I have a 1.5 cm by 1.8 cm Tarlov Cyst in my Sacral spine at the S 2-3 region. I’ve been having symptoms for the past 5 to 6 years (pain in the ‘tailbone’ area, sciatica down my left leg, pressure in both legs, pins and needles feeling in both feet, bladder and bowel issues, headaches, ringing in my ears and lower back pain. My Pain Management- Spine doctor doesn’t seem to attribute any of my symptoms to this cyst; although I have foraminal narrowing and two bulging discs at L 3-4 and L 4-5 with disc degeneration. I’m in constant pain… very depressing.

  2. Jean Hammock says:

    Hello, I just had my MRI 3/8/16 and it showed not a whole lot had changed, still disc degenerative disease, bulging disc L-4, L-5. Also L-5 -S-1. Mild loss of disc height from L3, – L4 through L5- S1 ( WENT FROM 5’5″ to 5’4″ ) then my doctor told me that I have arthritis in my lower vertebrae’s. But she never mentioned this ( small right S2 Tarlov cyst is noted ) what does that mean? Who should I speak to? I looked up symptoms and that could explain at least half of my symptoms! My last MRI before this one was 5/2009

    • Lynda Rex says:

      You said your cyst is small. The biggest problem with these cysts is when they block or compress the nerve. You have more than just the cyst to consider. I would talk over your problems with you family practice Dr. and your family. I think
      you need to determine with them what is the worst problem & google Tarlov Cysts. Tell the Family Dr. what you saw on line maybe your Dr. will also research this & decide the best option. Your doctors know your age, medical history best. You must advocate for your best interests
      if you think the Dr. doesn’t listen to you. Dr. F Feingbaum is in Dallas and that is where I live so my choice was easy. He also has good explanations of what these cysts do
      & other question can be covered on line. Don’t feel alone feel alone. We all feel your pain. Take care and best of luck!

  3. Who are the three surgeons who perform this surgery on Tarlov cysts? Are there truly only three of them currently? Is t true the only procedure is to clip/remove the cyst , pack the area with body filler e.g. Muscle/fat, and fuse the affected vertebra? What if they catch it sooner?

  4. Hi. I have Perinural cysts and its paining while Sitting, sleeping and walking making my life miserable. Plz give me opinion to get relieved from this

    • Lynda Rex says:

      Ice packs on your lower back, & where ever you have pain. When doing anything take breaks about every 10 minutes. Get wedge shaped pillow to sit on. Think about see Dr. Feingenbaum in Dallas. Good Luck!

  5. I’m in Dallas and have pain from Tarlov cysts and have thought about seeing this Dr also. My back Dr seems to think it may not help but its worth a try, right? I fell and severed my quad tendon and after numerous surgeries and being in leg casts, I developed this also. As if one problem with walking wasnt enough.

  6. Doreen Harris says:

    Does anyone have pain when you sit?? Even on a soft couch, when I sit I get a sharp pain.

    • Doreen,
      I think we all have pain when sitting/standing/walking etc… Once you have this long enough you will know how the nerves travel down your legs & back up again. They have a triangle shaped pillow type
      seat that you can get to help with pain while sitting. My best suggestion for pain is ice packs.
      Good luck and remember you are not alone in this.

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